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Does this sound like it might be ASD? A late diagnosis possible.

(15 Posts)
phlebasconsidered Thu 21-Apr-16 19:58:49

I feel at the end of my tether.

DS is 9. He is a lovely boy, really lovely. But.

He struggles at school. Handwriting is terrible, co-ordination is terrible, memory and concentration are terrible, but he's great at reading and poetry (!) He wasn't at all disruptive (until recently) and just "zoned out". He is dyslexic and dyspraxic. However, at home it was always different.

He won't wear certain clothes, touch certain things, say certain words. This is escalating. He has never liked school because of the noise and brightness, we moved him to a smaller school. However at home, he still likes it quiet (unless he's got his headphones on and then it BLASTS). He won't go to parties or discos or take part in team games. He is furious at the end of every school day. He hides under the duvet. Being washed is a battle. Cleaning teeth is a battle. Getting dressed is a battle. He is obsessively tidy. He worries constantly about daft things (The fire of London!). He has to check all lights and plugs are off at the end of every night.

He cracks his hands constantly. His nails and toenails are non existant. He can't stop this.

He can't say certain words because they taste wrong. He won't touch certain colours because they feel wrong.

here's an example. This weekend he said he wanted a pj day because he was tired. I agreed. Later on in the day it was sunny, dd wanted to go to the park. I suggested it, we have a meltdown because althogh he wants to go to the park he cant take his pj's off because he said it was a pj day. We go round in circles for two sodding hours until he eventually falls asleep through rage.

I know he struggles at school with friendship. He talks at people. He can't play team games, if people break rules he loses it. He freaks if people alter his den, game layout, whatever. Other children are starting to notice this and tease him by deliberately doing stuff to make him freak. I witnessed it this holiday.

He constantly repeats phrases and words from tv. He re-reads books and repeats bits of them.

He came home from school today and said it made him sad.

He is under the school nurse for anxiety, but he won't talk to her. She has referred him to the pedeatrician because of wht i've written and what she has observed. I'm not sure what to expect I just know he is very unhappy and so am I. I will feel dreadful if i've "missed" a diagnosis.

I suppose i'm just asking for help and what to expect. I dread bedtimes and mornings, and any new situation as they are always awful. We had a weekend away over Easter and he was constantly freaked out by the fact that we were not at the same table as yesterday for breakfast. At the adventure playground he spent most of the time loudly reading the instructions about safety to the other kids while his sister tried to shove him down the slide. She is starting to say that he is ruining her time at school.

He's so unhappy. What can I expect from the paedeatrician?

Sorry if i don't reply soon, i'll have a four hour bedtime fight in a bit.

sh77 Thu 21-Apr-16 20:26:29

Hope you get the answers and support you need. A lot of what you mentioned sounds like sensory processing issues and I would ask Paed about this. But then, sensory issues and anxiety are part of ASD. I would ask for an OT referral also.

PolterGoose Thu 21-Apr-16 20:55:31

Message withdrawn at poster's request.

PolterGoose Thu 21-Apr-16 20:57:15

Message withdrawn at poster's request.

phlebasconsidered Thu 21-Apr-16 21:02:07

Sorry, but what does OT mean? As a toddler and ks1 child he just about managed but only by being on the fringes and moving him to a tiny school. I've just got him into bed now and he will have at least an.hour of processes he "has" to do before sleep. Checking the switches, plugs, sockets. Tapping walls.

I did ask the school nurse if it was worth going to the gp but she said she had referred us. It will take at least 4 months.

I want to a doctor once before but they didn't take me seriously as he talks beautifully and basically just said he was a bit nervous so I looked like a loon. The school don't see any behaviours apart from lack of concentration, and fretting. I feel like they think I'm making up the epic tantrums or hours of fretting about where he might sit. Also,they have never been subjected to an.hour monologue on why Peter Capaldi did that thing in that episode of Dr Who.grin

phlebasconsidered Thu 21-Apr-16 21:09:49

Thanks guys. He actually spoke and walked etc normally. He has always been anxious and insistent about order though which is odd as I'm defo not like that. He's never really played imaginatively but he's bright enough to retell cash stories from tv or film. His sister helps him a lot. I will look at the books you suggest. We have tried doing the best / worse case scenario with him but it doesn't seem to help. I just feel i am floundering. He's in bed now but I know he will rearrange his duvet a set amount of times before he goes to sleep. I try to ignore it. I just need help but all the avenues seem to take so long!

phlebasconsidered Thu 21-Apr-16 21:10:47

Sorry for poor editing. Am on phone while trying to mark work and also eat!

PolterGoose Thu 21-Apr-16 21:50:37

Message withdrawn at poster's request.

phlebasconsidered Thu 21-Apr-16 22:02:57

Thankyou so much! It hadn't even really occured to me to film him because I'm often left as a single parent and don't feel like I've got a spare hand, but I could try to.calmly film him ritualising bedtime. Not so much meltdowns as i need to deal with my other child. Although tellingly they know when to absent themselves even though they are younger.

He is still not asleep although he is in bed. He has to read a certain amount once he is in bed.

When I spoke to the doc initially they made me feel like a shit parent. He's really not doing this to be an arse. He genuinely does have rules he sets himself. He even gets upset by them.

He knows we love him anyway. Although our house can't help but be frustrated and cross sometimes. I hate the morning's. I can't do the wrong socks thing when I have to be at work. I brought bloody expensive seamless ones and they are still wrong! He would go barefoot of he could. And nude.

PolterGoose Thu 21-Apr-16 22:11:36

Message withdrawn at poster's request.

Eliza22 Fri 22-Apr-16 08:23:03

He sounds very like my son, who had a diagnosis of asd at age 4 yrs. He was under the Paediatrician from age 2 and reviewed/tested over a 2 yr period. At age 9 he developed what appeared to be greater anxiety and symptoms of OCD (he had a co-morbid OCD diagnosis at age 10) and has been treated for ocd, ever since.

When he was around 18 months we had horrendous tantrums/distress/sensory issues and I resorted to filming him (not a nice thing to do to your own child) as a way of getting it across to the professions what was happening in day to day life. He often presented in clinic as quiet and compliant. He rarely slept but was like the Duracell bunny, he just kept on going.

I think, in my experience, that your son may be very much on the autistic spectrum and with additional clinical anxiety. His need to obsess and control/check about things and his rigidity with routine are absolute markers, for me. My DS is now 15. He is a high functioning Aspie but his OCD is a huge challenge.

Insist on referral to CAMHS and push for some form of diagnosis. It is NOT the dreaded "label" people fear....I breathed a sign of relief when a sad faced Paediatric Consultant told me "I'm afraid it is as you suspected, your son has autism". Everything made sense and we got the help we needed.

Verbena37 Mon 25-Apr-16 14:12:30

He sounds a lot like my son (11) who has a recent dx of high functioning ASD.
I recommend getting referred to have him assessed. We did it privately and I'm glad we did as it can take such a long time otherwise. If you can afford it, I'd highly recommend private assessment.....if you want the paediatrician and psychologists names who we used in Warwickshire, feel free to PM me.

phlebasconsidered Tue 26-Apr-16 20:13:35

Thanks for the responses. I rang the school nurse in tears the other day and she has pushed for a CAF, so we're finally rolling somewhere! She also advised seeing the GP to add more grist to the mill. I now need to prepare for the CAf, which looks like a big thing.

zzzzz Tue 26-Apr-16 20:38:07

I think anxiety and possibly OCD from your description. Video is a good idea. In most places you will need to wait quite some time for assessment but you can start using many techniques to release him from too much stress till then.
You sound like you must be doing lots instinctively.

phlebasconsidered Tue 26-Apr-16 20:57:38

I am really, I try to downplay a lot of things and i've tried the whole "what's the worst that could happen?" but that really didn't work! It's really hard for me to tell what's anxiety and what's not, my gut feeling is some of the refusal behaviour comes from anxiety and is a delaying tactic, but he really can't explain it himself. The letter I have says we have to fill in a Caf, a SNAP, a CAST and and a ton of stuff from the school. Looks like a long process. I don't think the school really notice much, he literally just sits there quietly all day by himself, until they ask him to do a test. A really naughty bit of me wants him to flip at school like he does at home so they don't think i'm making it up.

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